Celiac.com 03/05/2019 - The mechanics of how celiac disease and gluten-related disorders develop is still poorly understood. In order to shed light on the subject, a team of researchers recently conducted a systematic review of the current epidemiological knowledge of gluten-related disorders. They focused on variations in reported cases and rates of gluten-related disorders in the Asia-Pacific region.
The research team included Sara Ashtari, Mohamad Amin Pourhoseingholi, Kamran Rostami, Hamid Asadzadeh Aghdaei, Mohammad Rostami-Nejad, Luca Busani, Mostafa Rezaei Tavirani, and Mohammad Reza Zali.
For their reviews, the team searched Medline, PubMed, Scopus, Web of Science and Cochrane database for material published from January 1991 to January 2018. They searched the following MeSH terms and keywords: celiac disease, wheat allergy, non-celiac gluten sensitivity (NCGS), dermatitis herpetiformis and gluten ataxia and the prevalence studies. Each article was cross-referenced with “Asia-Pacific region” and countries in this region such as Australia, New Zealand, India, Pakistan, Turkey, Iran and others.
They found a total of 66 suitable studies that chronicled rates of gluten-related disorders in the Asia-Pacific region. They found celiac disease rates of 0.32%-1.41% in healthy children, and 0.05%-1.22% in the adult population, while rates in the high risk population ran as high as 11.8%. Earlier studies have shown few cases of dermatitis herpetiformis and gluten ataxia. Interestingly, even though wheat allergy is uncommon in most Asian-Pacific countries, it’s the most common cause of anaphylaxis.
This review emphasizes how little good information we have, and how much we need more and better epidemiological studies to reveal the origins and development of gluten-related disorders, and to better measure their effects upon health care delivery.
Read more at: J Gastrointestin Liver Dis, March 2019 Vol. 28 No 1
They are variously affiliated with the Gastroenterology and Liver Diseases Research Center, Research Institute for Gastroenterology and Liver Diseases, Shahid Beheshti University of Medical Sciences, Tehran, Iran; the Departments of Gastroenterology, Milton Keynes Hospital NHS Foundation Trust, Milton Keynes, UK; the Basic and Molecular Epidemiology of Gastrointestinal Disorders Research Center, Research Institute for Gastroenterology and Liver Diseases, Shahid Beheshti University of Medical Sciences, Tehran, Iran; the Department of Infectious Diseases, Istituto Superiore di Sanità, Roma, Italy; and the Proteomics Research Center, Faculty of Paramedical Sciences, Shahid Beheshti University of Medical Sciences, Tehran, Iran.

Celiac.com 05/30/2018 - One of the key aspects of non-celiac gluten sensitivity (NCGS) is that patients are diagnosed partly by the absence of celiac disease. That is, patients with NCGS, whatever their symptoms, do not have celiac disease. But could those patients still have some kind of gut damage, or permeability issues? Do people with non-celiac gluten sensitivity have distinct duodenal histological features? Researchers are seeking a better understanding of this still undefined condition.
Some researchers have suggested that histology may play a key role in NCGS, but there is still no consensus. A recent review by Bardella et al. revealed that histology is not always reported in NCGS studies, and exclusion of celiac disease is generally done by showing negative serology and/or genetic typing.
In June 2015, researchers published what is now called the Salerno Experts’ criteria, which proposes a double (or single)-blind, placebo-controlled, (DBPC), crossover gluten challenge as the gold standard to NCGS diagnosis
In order to investigate histological findings of people with suspicion of NCGS, we retrospectively evaluated duodenal biopsies of a cohort of patients undergoing clinical diagnostic algorithm for NCGS as proposed by the Salerno consensus.
The research team included B Zanini, V Villanacci, M Marullo, M Cadei, F Lanzarotto, A Bozzola, and C Ricci. They are variously affiliated with the Gastroenterology Unit, Department of Clinical and Experimental Sciences, University of Brescia, Viale Europa 11, 25123, Brescia, Italy; and with the Institute of Pathology Spedali Civili, Piazzale Spedali Civili 1, 25123, Brescia, Italy.
Their team’s main goal was to underline that the peculiar IEL distribution and the increased eosinophil count may represent a valid warning that help to identify patients with NCGS, given the absence of serological markers for NCGS.
The team also performed a CD3 immunohistochemical evaluation of T lymphocytes confirming that the IEL numbers were normal, but their distribution is peculiar, as noted by the clusters of T lymphocytes in the superficial epithelium and linear disposition of T lymphocytes in the deeper part of the mucosa above the muscularis mucosae.
They also note that their failure to fully match study subjects with placebo challenge is a limitation of this study, but stress the current uncertainty of the actual clinical diagnostic algorithm as supported by recent reviews of the literature. The team’s observations led them to note that histology may play a similar role in NCGS diagnosis as it does in celiac diagnosis.
Researchers do know that, unlike with celiac disease, there is an absence of damage or change to intestinal mucosa in patients with NCGS, especially an absence of villous atrophy. In addition, the morphological exclusion of celiac disease is a crucial assessment, because some patients classified as NCGS show increased duodenal IEL count (> 25 IELs/100 enterocytes), corresponding to Marsh I, or grade A lesions of celiac histological classification.
To properly diagnose NCGS, the team says it’s very important to confirm these features, to rule out any type of organic malabsorption diseases, and to definitively rule out celiac disease, via a negative celiac disease serology.
Taken as a whole, the team’s results provide evidence that both intraepithelial lymphocytes and eosinophils play a role in the physiopathology behind NCGS. They are calling for more studies to confirm their findings and to determine whether the results they observed were specific to NCGS.
Source:
Virchows Arch. 2018 Apr 4. doi: 10.1007/s00428-018-2346-9

Celiac.com 05/07/2018 - Pursuing a hypothesis that Gilles de la Tourette syndrome (GTS) and Non-Celiac Gluten Sensitivity (NCGS) may be related, a team of researchers recently set out to assess the efficacy of a gluten-free diet in 29 patients with Gilles de la Tourette Syndrome GTS in a prospective pilot study. The research team then evaluated patient progress after one year on a gluten-free diet.
The research team included Luis Rodrigo, Nuria Álvarez, Enrique Fernández-Bustillo, Javier Salas-Puig, Marcos Huerta, and Carlos Hernández-Lahoz. To establish a baseline of conditions, the team used a series of questionnaires, including YGTSS, Y-BOCS/CY-BOCS and GTS-QOL, which they then compared before and after the gluten-free diet.
The YGTSS questionnaires measured tics, while the Y-BOCS/CY-BOCS questionnaires measured the intensity and frequency of OCD. The study group included 23 children and 6 adults. In all, 74% of children and 50% of adults were male. When the study began, nearly 70% of children and 100% of adults showed OCD (NS). Both groups showed frequent symptoms of NCGS, with nearly half of the children and 83.6% of adults reporting headaches.
After one year of gluten-free diet, both child and adult patients showed a substantial reduction in tics (YGTSS), a reduction in the intensity and frequency of OCD, along with improved QOL measurements.
This study showed that both children and adults with Tourette syndrome and non-celiac gluten sensitivity who followed a gluten-free diet for one year showed a significant reduction in tics and OCD. A gluten-free diet seems to reduce tics and OCD both in both children and adults with Tourette syndrome and gluten sensitivity.
Clearly larger studies are needed to confirm these finding, but this is exciting news for those with Tourette syndrome and the doctors who treat them. Meantime, the number of conditions that seem to improve with gluten-free diet treatment continues to grow. Stay tuned for more developments.
Source:
Preprints 2018, 2018040332. doi: 10.20944/preprints201804.0332.v1

Celiac.com 05/15/2017 - For all the talk of studies touting evidence for non-celiac gluten sensitivity, the actual data don't stack up very well, according to an recent assessment by two researchers, whose results appear in Clinical Gastroenterology and Hepatology.
In an effort to determine the accuracy of using a double-blind, placebo-controlled study to confirm diagnosis of non-celiac gluten sensitivity in patients who respond to a gluten-free diet, researchers Javier Molina-Infante, and Antonio Carroccio recently set out to assess data on a series of such studies. Both researchers are affiliated with the Department of Gastroenterology, Hospital Universitario San Pedro de Alcantara in Caceres, Spain.
For their study, the pair analyzed data from 10 separate double-blind, placebo-controlled, gluten-challenge trials on a total of 1312 adults. The available studies varied significantly in many ways. The duration of the gluten challenge, for example, varied from 1 day to 6 weeks. The daily doses for those gluten challenges varied from 2 grams to 52 grams, with 3 studies administering 8 grams or less each day. The composition of the gluten-free placebo also varied considerably between tests; including variation by gluten-free product type, and levels of xylose, whey protein, rice, or corn starch containing fermentable carbohydrates.
Most of the studies did find gluten challenge to significantly increase symptom scores compared with placebo. However, out of 231 NCGS patients, only 38 patients (16%) showed gluten-specific symptoms. Moreover, nearly half (40%) of these patients showed similar or increased symptoms in response to placebo; something researchers term a 'nocebo' effect. That leaves just 6 or 7 patients out of 231 showing gluten-specific symptoms.
The researchers also point to heterogeneity and to potential methodology flaws in gluten challenge studies. They also present powerful questions about gluten as the trigger for symptoms in most patients with presumptive NCGS. Lastly, they highlight the importance of the nocebo effect in these types of studies.
These results certainly invite more careful, rigorous studies on the matter, and challenge researchers to provide solid data from well-crafted double-blind placebo controlled studies.
Basically, what little evidence we thought we had to support the existence of non-celiac gluten sensitivity has been shown to be thin at best. Until solid evidence arrives, the status of non-celiac gluten sensitivity will remain open to question and doubt by both researchers and potential sufferers.
Source:
Clin Gastroenterol Hepatol. 2017;15(3):339-348.

Hi, I recently was diagnosed as being gluten intolerant. I didn't go through with the biopsy to confirm as having Celiac Disease and the ttg-IgA test came up negative as well. Due to having classic neurological and digestive issues associated to gluten and being suggested by a doctor, I decided to go off gluten and began to see a massive difference. One of my major issues were terrible fatigue, an oversleeping problem were my cycle would 'magically' shift to morning hours disrupting daily activities. Apart from these, I have constant nausea, joint pain, nerve pain tending mostly to the right side of my body, severe memory and thinking problems ( brain fog - this has not improved yet being on a gluten free diet for about 2 months now) , anxiety attacks and chronic mild migraine headache. Exactly 2 weeks ago, I glutened myself accidently and within 2 days all my health concerns came back full swing. I want to know whether it takes this long for the symptoms to reside and whether there is any treatment available for the sleep condition as it severely affects my daily life and my career.
My sister who is 14 ( I am 22 ) has similar issues and her doctor just diagnosed her with fibromyalgia. Could I be having fibromyalgia too induced by gluten..or could this be Non-celiac gluten sensitivity? Is there a solidified connection between the two?

I was diagnosed with IBS-constipation about 40 years ago. Last year, my bowels changed and I went from constipation to diarrhea. This May (2014) I underwent an endoscopy for celiac along with a 10-year re-check colonoscopy (my first one was normal except for evidence of IBS). The prep was agonizing for me and I've yet to feel healthy since those two procedures done in early May. Within a week after the procedures (and while being gluten-free), my bowels returned to constipation. I'm finding it extremely hard to find a good diet that is gluten-free while also having enough fiber in it to assist with the constipation. Is there anyone else who suffers with both of these situations? If so, what are you eating?
Any help is much appreciated!

I thought this part of the study was interesting. It brings to light how some people can go gluten-free except for their beer and they still feel better. I'd like to read more studies on Celiac vs NCGS.
"Whereas celiac disease subjects should maintain a lifelong, strict GFD and limit their exposure to gluten to foods containing less than 20 parts per million (13,14,15) NCGS subjects can be more liberal and titrate their exposure to gluten as needed to avoid symptoms."
http://ajgastro.gastrolib.be/ajg/journal/vaop/ncurrent/full/ajg201441a.html

Hi everyone... I do not have celiac disease but I have something that mimics it and I can't figure out what is causing it. I had an EGD with biopsy and it showed duodenal intraepithelial lymphocytosis, top heavy at villous tips. Other than that, just some mild gastritis and esophagitis. The duodenal IELS in that particular pattern can be indicative of latent celiac sprue (but I am negative DQ2 and DQ*, negative endomyseal, no elevated TTG IGG or TTG IGA or anything like that so no celiac), H pylori (I am negative), NSAID use (I dont use any nsaids or medications other than multivitamins), Crohn's or colitis (I am negative... I had a colonoscopy with random bxs because i had this almost year long period of extreme diarrhea... like going over 10 times a day consistency of straight water.... negative for infection, but i did have WBCs in stool.. It would happen every couple weeks where i would have 3 or 4 days of this.. but since i changed my diet no more diarrhea at all and i am totally normal). The duodenal IELS can be indicative of a systemic autoimmune process.... I did have ANA checked twice and it was negative both times. I had rheumatoid factor checked twice and only one time it was slightly elevated... so a rheum doc... he said i show no signs of RA or anything so I'm fine. The only other thing IELs can be indicative of is small bowel overgrowth or infection... that's a possibility... even though i am negative for all infections.... but i thought maybe my flora was messed up or something with all that diarrhea... but I am fine now.
So now, I am getting strange problems not related to GI distress. For example, sometimes, the skin on the roof of my mouth will peel off. That only happens like once every couple months, but that's been happening for years now. I was having this period where I would wake up in the middle of the night and my left eyelid wouldn't open for a minute... just no feeling there. Then, I had PVCs in my heart for the first time ever in my life and they lasted about 2 months and then disappeared and ive been fine since. I would get about 6-10 PVCs a minute all day long. About 2 weeks after the PVCs stopped, I got a blepharospasm in my right lower eyelid that lasted about 2 and a half months. It would pulsate all day long non-stop and certain things would trigger it. Such as if i touched my forehead it would pulsate even more, or if i looked to the left it would pulsate more. I saw the eye doc and i have an appt with an eye specialist and they said they can shoot botox in the nerve to kill it... but just this week, miraculously and mysteriously, it almost disappeared... Funny thing is... Since i practically cut out all soy and lecithin like egg yolks the spasm is gone. I read that lecithin is choline, choline affects the basal ganglia in the brain, causing abnormal contractions in a hyperactive state to happen, such as with the PVCs and blepharospasm. SO that is just a theory I have...could just be coincidence. Oh, i forgot to mention, I have also had allergy testing and am negative for all IGE stuff i was tested for... also had the test on the arms where they check for like 40 different substances and i am negative. So then, about 6 months ago i started breaking out in these bumps that look kind of like acne, they are on my chest, top of shoulders, and upper back. They don't itch or hurt. So finally I went to dermatologist a few days ago and he said folliculitis (inflammation of hair follicle) so i said is that bacterial? And he said it can be but not always... can be caused by tons of things... so i just got some topical cleocin/clindamycin to put on it. I think it looks slightly better since i haven't been eating soy. Again, could just be a coincidence.
Now for my family history: my sister has something like lupus but they cant figure it out, she just got put on plaquenil, she also has hashimoto thyroiditis and autoimmune gastritis so she gets perniscious anemia from that. My brother has alopecia areata (which is healed now) and dyshidrosis rash on his hands. Lately he keeps getting these bout where his whole face swells up but he doesn't want to go to the doctor (and i can't blame him... i don't go to docs anymore either because it is so frustrating to just have multiple specialists always say i don't know... thats why i didnt go to the skin doc for like 6 months). My dad, his sister, and her daughter all have multiple sclerosis. I have 2 maternal cousins with Crohn;s and one maternal autn with ulcerative colitis. My mom had hodgkin's lymphoma in her early 40s, she is fine now other than diabetes. My mom's sister and their aunt (my great aunt) had Non-Hodgkin's lymphoma. So we have lots of autoimmune disorders and lymphomas in my family.
So, I am convinced that something I am eating in processed foods is making me react... at least, i think it causes some delayed inflammatory effect... i forgot to mention i also get ocular migraines with aura... def related to menses... but better by watching sugar levels. I exercise every day for 30 minutes and eat a healthy all natural diet.. though i do stray from time to time. I only eat a wheat product maybe once every 4 or 5 days. As of this week, I am avoiding soy to see if it helps with the folliculitis.
Back to the duodenal IELS... i read other proteins can cause that such as soy, gluten, cow dairy, cereals and rice, tuna, and eggs. Problem is.. when u have the IELS all u get tested for is the glutne and they don't test or even mention anything about the other possible food intolerances, and I know because i work for gastroenterology. It is really frustrating. Any advice, please!!!!